Please sign the following iPetition...( Panorama investigation)

Go to page

Jan

Update:
Our petition is now hosted on iPetitions... please sign!
Please follow the link below and sign our petition to help us highlight the plight of ME sufferers by getting the BBC Programme Panorama to investigate and highlight the ways in which sufferers have been marginalised and neglected by UK government bodies.

(I apologise if you have already signed through the email address I provided, please sign again this way.)

*It has been updated and hopefully improved upon since the draft was posted below please view the finalized petition &sign at iPetitions*

Hi all,

In the interest of the general public we petition the Panorama Team to conduct a special investigation into the human rights travesty that is the long held government approach to Myalgic Encephalomyelitis, ME.

The UK is a member of The World Health Organisation, and WHO has defined ME as a neurological disease since 1969. Why have Psychologists been allowed, even encouraged, to monopolise a psychosomatic approach to this very real physical disease at the complete neglect of biomedical research?

Why has a seriously debilitating neurological disease, which can be fatal, been allowed to be dismissed as Chronic Fatigue Syndrome, CFS?
There are many misconceptions about the very nature of ME, the most prevalent being the notion that, in the majority of cases, the overwhelming symptom is one of fatigue. This has permeated the thinking about this disease so profusely that it has long been dubbed “Chronic Fatigue Syndrome” a situation that has been catastrophically damaging to sufferers and their carers/parents. The Oxford definition of CFS as used by the psychiatric lobby, is deliberately broad and vague, it does not require myalgias or encephalomyelitis, they are only listed as optional. Of the 21 clinical and scientific researchers who wrote the Oxford Guidelines, eight were in psychiatry or psychology, another six were research scientists, non-psychiatric clinicians were few.

CFS is a waste basket diagnosis, it allows patients to be neglected, ignored, even ridiculed if they continue to search for the biological cause of their very real disease. Doctors are trained how to 'deal' with such patients. They are told not to get into conversation about physical symptoms or to let on that they think they're delusional. To send them off with painkillers and anti depressants, a course of CBT to correct their abnormal illness beliefs and GET to drag them off the sofa and back to work. When this frankly ridiculous approach to treating a neurological disease fails to work, or results in further disability, who's to blame? The patient.

It has been convenient for both Psychologists and the medical establishment at large to continuously reiterate the same propaganda. Maybe they actually believe the misinformation themselves, maybe they realise they're in the wrong, who knows?
Unfortunately the harsh truth has been known by those unfortunate enough to have had their lives blighted by this disease for decades. Patient advocates have repeatedly put foreword articulate arguments quoting scientific studies that show significant and varied physical abnormalities in ME patients. The abnormalities found in ME patients (when the correct tests are done) include: brain lesions, abnormal fluid in their spinal cords and immune system dysfunction, why have these findings repeatedly been ignored?

Sufferers of the extremely debilitating neuro-immune disease ME have been lumped into the broad waste basket diagnosis of CFS and quickly dismissed by the medical profession at large. The Oxford Criteria is too inclusive. A number of different types of illness including ME are being lumped together under the single banner 'CFS'. The Royal Colleges Report on CFS 1996 used the Oxford Criteria and claimed up to 1.4 million people in the UK had CFS. Estimates of ME incidence are much lower. Supporters of the psychosocial model and the term CFS are studying idiopathic chronic fatigue and claiming otherwise.

The soon to be published Medical Research Council CFS PACE* trial is one example of many government funded studies which researched solely psychologically based approaches to ME/CFS. This study of CBT and GET on ME, costing millions of pounds of tax payers money, uses the vague Oxford Criteria psychologists love so much. The government bias towards a psychosomatic approach is bewildering. Who ultimately can be held responsible for allowing this to happen? What are the motives behind it?

Why when Professor Malcolm Hooper wrote to Sir Michael Rawlins, chairman of NICE, supplying a 442 page report of evidence supporting his complaint against the MRC PACE trial did Sir Michael Rawlins feel it necessary to refuse to even look at the evidence provided and immediately return the entire report, stating he was “not prepared to enter into any correspondence on the matter”?
Why, when a group of sufferers brought a judicial review about the inappropriate nature of the NICE Clinical Guidelines(CG53) on ME/CFS, did the judge refuse to admit a large proportion of their evidence, then throw out their case "for lack of evidence"?

Why is the MRC so intent on withholding files on ME, held in the UK Government National Archives, that date back to 1988 from the general public? The files in question, originally due for release in 2023, are now to remain secret until at least 2071. Why does the government deem it necessary to enforce such an extraordinarily long time of closure on these files which are of great significance to public health?

Why aren't ME patients routinely referred to Neurologists and why are Neurologists still not widely knowledgeable about ME? Few sufferers get to see a Neurologist on diagnosis, many ME sufferers will never see one. Why is there no empirical diagnosis available under the NHS for ME/CFS? Why will the NHS not fund the tests that diagnose the disease, yet they will fund the many tests that don't show the physical damage caused by ME?

Why was Sophia Mirza, a gravely sick ME sufferer, forcibly removed from her home in 2003 and sectioned in a mental institution? An action which ultimately hastened her death. In Sophia's case it her autopsy that finally provided the physical evidence of disease, in life she was utterly neglected by the medical profession who refused her treatment and instead inappropriately incarcerated her in a mental ward. This criminal neglect of vulnerable ME sufferers has been the status quo for decades, why has this been allowed to happen and for so long?

Why when there are many opportunities to research the physical disease process in ME patients, is this not being done and instead the psychosomatic approach to management repeatedly studied instead? Why is it continuously left to patient funded charities to conduct biomedical research when the government is willing to spend millions on trials for CBT and GET?

Thanks to a number of committed researchers in Nevada, a recent study was published in Science that strongly links the retrovirus XMRV* to a well defined cohort of ME/CFS patients. This was the most exciting and encouraging step forward in research into the disease in many years. Why was a UK XMRV study* (led by psychiatrists) then immediately rushed through without consultation with the WPI, who's study they were supposed to be replicating, and given only four days for peer review? The resulting rushed study was unable to find XMRV, which is known to be difficult to detect, in any of the 186 samples. The rigorous WPI study detected XMRV in 3.7% of the healthy population studied, by that ratio even if every single one of the Imperial College study patient group had been wrongly diagnosed with ME/CFS and simply had idiopathic chronic fatigue, they still should have found evidence of XMRV in 6 of the samples. This was yet another cynical attempt by vested interests to discredit any scientific study that dares show proof of physical disease.

It has taken a privately funded institute in America to bring this evidence to light more than 26 years after it was widely known to be a serious neuro-immune disease. The 1984 outbreak in Nevada provided substantial evidence of physical disease. Patients scans showed brain legions and other tests showed distinct immune dysfunction. However, the American authorities already dealing with the AIDS epidemic decided to ignore this serious transmittable disease at great cost to all involved. The way the CDC ignored the outbreak was shameful and once the patients had conveniently been marginalised, the government stance was set in stone. The situation in America is scarily similar to the one in the UK except for one saving grace, a few wealthy, caring, truth seeking people fighting against the system to help patients and get justice. This whole fiasco is carefully reported in full by Hillary Johnson, an investigative journalist, in her book Osler's Web* (originally published in 1996).

There is an unfortunate history of ignorance towards previously unknown diseases. MS was once dubbed the malingerers charter, AIDS was once dismissed as a disease that only affected gay men. When will the wide spread discrimination towards ME sufferers end? When will patients finally be free from being coerced and bullied into dangerous GET programs? When will the severely affected finally be free from the threat of being sectioned, simply for failing to recover? The 1999 Panorama Programme “Sick and Tired” highlighted the mistreatment of children with ME by the medical profession, it is regretful nothing has changed.

We need to once and for all dismiss the ridiculous opinion that ME is in anyway related to mental health problems or abnormal illness beliefs. People become anxious and or depressed due to this chronic illness, as with any serious illness. Helping people overcome these difficulties is important and can no doubt improve quality of life. However, it is a completely separate issue to the illness itself and should be treated as such.

Although this petition has mainly referred to ME/CFS. ME/CFS has many similarities with the related neuro-immune diseases Fibromyalgia, Atypical MS, Multiple Chemical Sensitivity and Gulf War Syndrome. The need for the right medical tests to be done in order to properly diagnose these patients and biomedical research to be done to further treatment applies equally to these conditions which are likely all variants of the same disease simply going under different names.

Yours Sincerely,

References

The CFS Oxford Criteria

The CFS Oxford Criteria was set out in the Oxford Guidelines - MC Sharpe et al. A Report - Chronic Fatigue Syndrome: Guidelines for Research, JRSM Vol.84, Feb. 1991, pp 118-21.
OXFORD CRITERIA (1991)
Chronic Fatigue Syndrome (CFS)
a:- A syndrome characterised by fatigue as the principal symptom
b:- A syndrome of definite onset that is not life long
c:- The fatigue is severe, disabling, and affects physical and mental functioning
d:- The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time
e:- Other symptoms may be present, particularly myalgia, mood and sleep disturbance
f:- Certain patients should be excluded from the definition.

They include:
i:- Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia). Such patients should be excluded whether the medical condition is diagnosed at presentation or only subsequently. All patients should have a history and physical examination performed by a competent physician
ii:- Patients with a current diagnosis of schizophrenia, manic depressive illness, substance abuse, eating disorder or proven organic brain disease. Other psychiatric disorders (including depressive illness, anxiety disorders and hyperventilation syndrome) are not necessarily reasons for exclusion.

Ramsay definition:
Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

[Muscle phenomena]: Muscle fatiguability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.

[Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.

[Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoeuvres such as turning a key in a lock or taking the cork of a bottle.
Circulatory impairment. Most cases of ME complain of
Cold extremities and
Hypersensitivity to climactic change . . .
Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill
Cerebral dysfunction
The cardinal features:
Impairment of memory
Impairment of powers of concentration and
Emotional liability

[Other] common deviations from normal cerebral function:
Failure to recall recent or past events,
Difficulty in completing a line of thought
Becoming tongue-tied in the middle of a sentence, and a
Strong inclination to use wrong words, saying “door” when they mean “table” or “hot” when they mean “cold”
Complete inability to comprehend a paragraph even after re-reading it
Bouts of uncontrollable weeping
Alterations of sleep rhythm or vivid dreams, or both

[Accompanying] features [that] can only be attributed to involvement of the
Autonomic nervous system:
Frequency of micturition (urination)
Hyperacusis (hypersensitivity to noise)
Episodic sweating
Orthostatic tachycardia . . .
Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.
An alarming tendency to become chronic. [Added in the 2nd edition, 1988]
Return to the top

The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.
Instead of an uneventful recovery the patient is dogged by:
Persistent and profound fatigue accompanied by a medley of symptoms such as
Headache
Giddiness
Muscle pain, cramps, or twitchings
Muscle tenderness and weakness
Paraesthesiae [numbness or tingling in the extremities]
Frequency of micturition [urination]
Blurred vision and/or diplopia [double vision]
Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
Tinnitus [constant sound in the ears], and a
General sense of “feeling awful.”
Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia …
All cases run a low-grade pyrexia (fever), seldom exceeding 100F (c. 38C) and usually subsiding within a week.
A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.

The Whittemore Peterson Institute for Neuro Immune Disease Research Centre is located at The University of Nevada, Reno. http://www.wpinstitute.org/

The paper entitled Detection of Infectious Retrovirus, XMRV, in the Blood Cells of CFS Patients was published in Science on 8th October 2009. http://www.sciencemag.org/cgi/content/abstract/1179052
After further refinement of testing XMRV was detected in an astonishing 95% of the patient group. Quote from WPI website Overview of XMRV section.
“ We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections..
Because retroviruses are known to cause inflammatory diseases, neurological disease immune deficiency and cancer the discovery of XMRV has far reaching implications for the prevention and treatment of not only lymphoma, one of the potentially devastating complications of ME/CFS but prostate cancer and perhaps many others. ”

Osler's Web, originally published in 1996 by Hillary Johnson. Is an investigative journalists detailed account showing lack of appropriate on behalf of the CDC and NIH to ME. The story starts back in the early eighties and is a thorough first hand account in which all sources are named and all information rigorously authenticated. A must read for any ME campaigner able to do so.

Quote about the book from http://www.oslersweb.com/
“ Osler's Web will introduce you to the men and women who first recognized this disease in their medical clinics and, eventually, described the disease in medical journal articles in the middle and late 1980s. You will meet, as well, the scientists and bureaucrats inside the Centers for Disease Control and the National Institutes of Health who attempted to squelch research throughout the 1980s and 1990s, and scientists in elite private institutions who made important discoveries that were buried under a blizzard of propaganda. You will hear the voices of people who fell ill--children and adults--and the voices of their doctors, who struggled to help them.”

Senior Member

Senior Member

Nice one, Jan Not sure if you read my post. If i had saw this, i would have shut the F up. Just saw it now, signing it now. Great idea, This is what you all need to be thinking, its hard i know as many of you are so ill, but dont waste energy on pointless things, yes get support and information and share each others storys. But dont throw your preciouse energy on things that ultimatley will achieve Zero. This is great. I love this idea. In the memory of poor Sophia, I hope the team consider this, i really do. Damm long overdue. i assume this email address is to be fowarded by you I Know you all will sign this too

Senior Member

I often feel let down by the advocacy write-ups, a lot of them aren't rigorous or well-presented enough and seem like they could do with some proof-reading and more judicious editing, but yours reads so well to me that the only thing I spotted on a quick reading was one "who's" / "whose" error. That's an incredibly low error rate. A lot of British journalism can't better that! As regards the length, I normally feel these things read to the neutral as long-winded and baffling, but I think this one is absolutely fine in its context, and I think it's fine to have a very short opening statement of what the petition is, followed by a longer expansion on the detail.

The only thing you forgot to mention is that we don't want Esther Rantzen in the doc.

Would you mind PMing me when the final draft is complete and I'll give it one last proofing? Unless of course you're confident you have that covered...

Is it OK for people from overseas to sign it? And if so, perhaps they need the signficance and potential value of a Panorama explaining a bit.

UK sigs will be much more valuable of course, so if there were an easy way to identify all the UK-based members and PM them about it, that would be worth doing. And get them all to pass it on to friends and family.

Senior Member

When the XMRV association is confirmed by an independent study, it seems to me that the possible risk to the general population, and the scandal of letting the situation go on so long without being addressed, combined with the question of why the UK studies covered it up / "is it in the UK?" - all of that seems like a really explosive story and perfect for Panorama. I guess what their ideal story would be, is something that they can safely expose (ie something which nobody knows yet and isn't universally accepted, and which is nevertheless clearly true), which is both explosive and shocking and impacts everyone - and XMRV fits the bill perfectly. Also, if it were about XMRV, that would seem a preferable candidate to hang it all on, being new to the public and all. Don't know how all that might influence your draft, or accompanying letter or whatever, but I just mention it because it seems like those factors would be significant things for them.

Hi All - New 'Kid( I wished!) on the Block' and my first Post.
Sproggle - A comprehensive and valid document. Perhaps Panorama would like to include in their investigation the farcical ATOS (UK) 'medicals' that are having such a negative impact on the health and finances of ME sufferers.

Can't say I know anything about this particular group with regards to medicals or peoples expriences of them. Is it that all disabillity medicals are done through them? I certainly agree they are pretty useless when assessing disability in ME. Do you have a link? The official ATOS site is just them saying they're great lol! :innocent1:

Jan xx

*To support our petition please send ya name and general location tomeadvocacyalerts@googlemail.com

Senior Member

=Galena1;63694]Hi All - New 'Kid( I wished!) on the Block' and my first Post.
Sproggle - A comprehensive and valid document. Perhaps Panorama would like to include in their investigation the farcical ATOS (UK) 'medicals' that are having such a negative impact on the health and finances of ME sufferers.

Jan

For those that don't know Panorama is the leading bbc Investigative Journalist documentary series in the UK. They do many 30min programmes but also extend programmes to upto an hour when the subject requires it. It has a lot credibility and had taken on difficult subjects and organisations in the past including investigating GlaxoSmithKlein with regards to Seroxat in 2002 transcript: http://news.bbc.co.uk/1/shared/spl/hi/programmes/panorama/transcripts/seroxat.txt

Few more additions, will definitely leave it alone now lol! :Retro smile: It's soo tantalizingly close to being finished!!

Can't say I know anything about this particular group with regards to medicals or peoples expriences of them. Is it that all disabillity medicals are done through them? I certainly agree they are pretty useless when assessing disability in ME. Do you have a link? The official ATOS site is just them saying they're great lol! :innocent1:

Hi and thanks for the welcome. You really do need to be aware of the aims of ATOS and how they operate. As far as I am aware ATOS have been contracted by the DWP to carry out all UK medicals. Read a report somewhere recently, typically I've forgotten where, that confirmed what I already new, that ATOS 'doctors' are paid by results (ie getting people off benefits, or at least reducing them). Some of these ATOS people are making 1000s a week out of the system.

Senior Member

I have just mailed Sproggle the following suggestions for next steps, the first 2 being the immediate jobs I'm recommending before sending. Hopefully the community can help out with this workload!

1. In order to enable the petition to be both submitted quickly AND be allowed to gather additional signatories, create a petition at that petitions site, referencing the full document over the web (not only in PDF format) if the 150-word limit is fixed. Perhaps a form of words in the petition using just the first paragraph or two and referencing the full letter. At the same time, in the document/letter, in the signatories section (immediately after Yours Sincerely) follow up Yours Sincerely with your name, followed next by a list of all the named signatories starting with the most distinguished (lettered) signatories you have acquired, and at the end of the list, reference the Petition on the web site with text such as "Further signatories to this petition are continuing to be added via this online petition at petitions.org".
THAT WAY YOU CAN HAVE YOUR CAKE AND EAT IT! Send now, and have the signatories list grow afterwards.

2. When you send the letter, phone them up a few days later (or get someone else to do it on your behalf via the forum) asking if they have received it and drawing their attention to the online petition. When the online petition passes certain numbers of signatories, phone them up again to mention that "we now have 1000 signatories" etc and ask if a decision has been made yet.

3. It's also worth someone phoning them up and keeping in contact and passing them on to trusted contacts as they conduct their investigations, to try to make sure they don't get sidetracked by confusadors into talking to the wrong people. Getting a personal relationship with someone involved at the BBC could be crucial.

4. It is worth continuing to campaign hard for more signatories, by publicising to ME/CFS organisations, bulletins, etc. That is a matter of bumping the Panorama thread daily at the right time by posting a brief update, and asking people what they can do to help publicise it. Even though we may already have enough signatories, as with Dr Myhill every extra weight above the critical mass is still worthwhile because the huge and overwhelming response will carry extra weight in the enthusiasm of the research team that they have an important issue here. Ask everyone to email all their sympathetic friends about the petition, and asking them to forward it to anyone who might sign.

5. Looking further ahead, this document is in my view of such worth that it should be re-used and made prominently available to ME/CFS campaigners as a resource. A suitable permanent web location for it should be found, Cort may also be able to suggest an appropriate prominent location on Phoenix Rising.

6. We could have explored further refinements to the presentation, including e.g. putting 2 or 3 quotes (such as quote 3 from the references) at the top as an introduction, highlighting the questions asked in bold, etc. Anything can always be improved, but you also have to draw the line according to time deadlines. But it should be further developed along these lines, on dedicated web space, and re-used in other contexts (letters to MPs etc). So I see this document as the basis for much enjoyable ongoing work!

Senior Member

[FONT=Times New Roman, serif]For clarity, this document uses ME in reference to the disease Myalgic Encephalomyelitis, CFS in reference to idiopathic chronic fatigue, and CFS/ME when referring to the attempts by [/FONT][FONT=Times New Roman, serif]psychiatrists[/FONT][FONT=Times New Roman, serif] to merge the two and redefine Myalgic Encephalomyelitis as a somatoform disorder [/FONT][FONT=Times New Roman, serif](i.e. a psychiatric condition).[/FONT]

We, the undersigned, request that the Panorama Team conduct an investigation into the conduct of the Department of Health, Medical Research Counciland National Institute for Clinical Excellence with regards to the diagnosis, treatment and research of the neuro-immune disease Myalgic Encephalomyelitis (ME) [1] - the disease that affected the late Lynn Gilderdale. [2]

Why has the Department of Health allowed psychiatrists to dismiss a seriously debilitating [3], potentially fatal disease as so called “chronic fatigue syndrome”? Why have psychiatrists been allowed and even encouraged to monopolise both treatment and research of a disease?

These government bodies are responsible for sufferers of ME being given a meaningless “waste basket” diagnosis of “chronic fatigue syndrome” and then prescribed Cognitive Behavioural Therapy(CBT) “to correct their abnormal illness beliefs”, in addition to being coerced into potentially dangerous and unproven Graded Exercise Therapy(GET) programmes. When this approach fails to work, or results in further disability, it is the patient that is often blamed for failing to recover.

The UK is a member of the World Health Organisation(WHO), which has defined ME as a neurological disease since 1969. The criteria for ME are best described by the Canadian Consensus Document.[4] Psychiatrists use their own vague Oxford Criteria [5] which requires neither myalgias nor encephalomyelitis, the main criterion being only “fatigue”. Those using the Oxford Criteria in relation to “CFS/ME” are in fact studying only idiopathic chronic fatigue and claiming otherwise.

The Wessely School [6] psychiatrists claim that ME does not exist [7], and that patients are in fact suffering from “chronic fatigue syndrome”, a somatoform disorder (i.e. psychiatric). They insist that doctors should avoid legitimisation of symptoms [8] and recommend that no investigations should be conducted to confirm the diagnosis [9]. Despite well documented evidence to the contrary [10], in 1997 Michael Sharpe stated his view that “Suicide is the only cause of death in CFS” [11]. The Wessely School “medical” advisors are influential in the UK benefits system and oppose the payment of disability benefits to “CFS/ME” claimants [12]. In 1999 Michael Sharpe revealed his view towards “CFS/ME” patients by referring to them as “the undeserving sick”. This campaign of misinformation [13] has led to some ME sufferers being dismissed as malingerers by their doctors and on occasion verbally abused [14]. There have also been attempts to have ME reclassified as a psychiatric disorder [15].

NICE does not acknowledge or recommend the tests that diagnose ME. Instead NICE recommends tests known not to show disease and as a result there is no empirical diagnosis available on the NHS. There are many abnormalities to be found in ME patients, when the correct tests are done, including abnormal blood flow to the brain, brain lesions, abnormal spinal fluid and immune system dysfunction [16]. Instead diagnosis remains that of “exclusion” and the absence of a proper medical investigation also leads to misdiagnosis and neglect of patients with treatable conditions [17].

The government-funded MRC [18] is intended to be an independent body that supports research across the biomedical spectrum. With regards to ME, this is not the case. The soon to be published MRC PACE [19] trial, studying the effects of CBT and GET, is just one example of government funds being awarded solely to psychologically based studies. This misuse of millions of pounds of tax payers' money is an insult to ME sufferers and their care givers.

Professor Malcolm Hooper lodged a formal complaint against the MRC PACE trial highlighting the dangers of such a study on ME patients. Sir Michael Rawlins, the chairman of NICE, is ultimately responsible for providing guidance on the appropriate treatment and care of people with specific diseases and conditions. He refused to even read the Report of Evidence [20] Professor Hooper sent him supporting his complaint.

Sufferers of ME desire to know why the MRC is withholding files from the general public on ME that date back to 1988. These files are to remain closed until at least 2071, an extraordinarily long period for files that are of great significance to public health [21].

A peer reviewed study by the Whittemore Peterson Institute(WPI) [22], recently published in Science, strongly links the newly discovered human retrovirus XMRV to a well defined cohort of ME patients. Why was a UK XMRV study by Imperial College London, involving psychiatrists, then quickly rushed through and given only four days for peer review? The resulting study was unable to find XMRV in any of the 186 samples, whereas the WPI study found XMRV in 3.7% of controls. Even if every patient in the Imperial College cohort had idiopathic chronic fatigue and not ME, if their testing had been done adequately they should still have detected XMRV in several samples.

How can the Department of Health justify never having commissioned or evaluated any research on the relationship between ME and blood-related disorders? There have been well documented outbreaks of ME dating back to 1955 and there is the potential for transmission throug blood, organs and sperm. A Freedom of Information request revealed that the UK Advisory Committee on the Virological Safety of Blood discussed the need to screen blood for the infection that causes ME in 1991 - why was this never acted on? It is a fact that XMRV [23] is present in the UK as more than a dozen ME sufferers have already tested positive through VIPdx [24].

The recently published findings from the All Party Parliamentary Group on ME [25] conclude that the government has given “insufficient attention to biomedical research.” To prevent further mistreatment and neglect of ME sufferers there is an urgent need for the government to recognise, manage and research ME as a serious disease. Until the government corrects its approach towards the diagnosis, treatment and research of ME, patients will remain vulnerable to coercion by doctors into potentially harmful GET and CBT programmes. Those severely affected remain at risk of being sectioned under the Mental Health Act, an inexcusable action which in Sophia Mirza's case hastened her death [26].

Yours Sincerely,

[FONT=Times New Roman, serif]References

1. Myalgic Encephalomyelitis: [/FONT][FONT=TimesNewRomanPSMT, serif]My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation[/FONT][FONT=Times New Roman, serif].[/FONT]
[FONT=TimesNewRomanPSMT, serif]2. Lynn Gilderdale 1977-2008 [/FONT]http://www.lynngilderdale.net/tribute.html[FONT=Times New Roman, serif]3. [/FONT][FONT=Times New Roman, serif]“I hope you are not saying that (ME)CFS patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses (in 2009) I would rather have HIV” [/FONT][FONT=Times New Roman, serif]Nancy Klimas. One of the world’s foremost AIDS and ME/CFS physicians, Professor of Medicine and Immunology, University of Miami. New York Times, 15[/FONT][FONT=Times New Roman, serif]th[/FONT][FONT=Times New Roman, serif] October 2009.[/FONT][FONT=Times New Roman, serif]4. [/FONT][FONT=TimesNewRomanPSMT, serif]Overview: [/FONT]http://www.mecfswa.org.au/UserDir/Documents/canadian_consensus_overview_me_cfs.pdf[FONT=TimesNewRomanPSMT, serif]Full document:[/FONT]http://www.mecfswa.org.au/UserDir/Documents/JCFS%20Canadian%20Clinical%20Case%20Definition%202003.pdf[FONT=TimesNewRomanPSMT, serif]5. Oxford Criteria [/FONT]http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/CFS Oxford Criteria 1991.pdf
[FONT=TimesNewRomanPSMT, serif]6. Professor Simon Wessely, [/FONT][FONT=TimesNewRomanPSMT, serif]Institute of Psychiatry, King's College London[/FONT][FONT=TimesNewRomanPSMT, serif]and his peers including Michael Sharpe. See [/FONT][FONT=TimesNewRomanPSMT, serif]Illustrations of Wessely's Words[/FONT][FONT=TimesNewRomanPSMT, serif] pages 23-30 of [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif]” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=TimesNewRomanPSMT, serif]7. [/FONT][FONT=TimesNewRomanPSMT, serif]“[/FONT][FONT=TimesNewRomanPSMT, serif]The label of CFS avoids the connotations of pseudo-disease diagnoses such as ME[/FONT][FONT=TimesNewRomanPSMT, serif]" [/FONT][FONT=Times New Roman, serif]Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe [/FONT][FONT=Times New Roman, serif]Occup Med 1997:47:4:217-227 [/FONT][FONT=TimesNewRomanPSMT, serif]8. [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]The conventional wisdom is that illnesses are made real when they are legitimised by a doctor's diagnosis.....[/FONT][FONT=TimesNewRomanPSMT, serif] reinforcement of unhelpful illness beliefs can have an unhelpful effect on patients[/FONT][FONT=TimesNewRomanPSMT, serif]” [/FONT]
“[FONT=Times New Roman, serif]ME: What do we know (real physical illness or all in the mind?)” [/FONT][FONT=Times New Roman, serif]Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde. Referenced from [/FONT]http://www.meactionuk.org.uk/Quotes_from_Mike_Sharpe.htm[FONT=TimesNewRomanPSMT, serif]9. [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]The use of tests to diagnose the chronic fatigue syndrome should be done only in the setting of protocol-based research.......[/FONT][FONT=Times New Roman, serif]We consider a mental status examination to be the minimal acceptable level of assessment.[/FONT][FONT=Times New Roman, serif]" [/FONT][FONT=Times New Roman, serif]The Chronic Fatigue Syndrome: A Comprehensive Approach to its Definition and Study. K. Fukuda[/FONT][FONT=Times New Roman, serif], S. Straus, M Sharpe et al Ann Int Med 1994:121:12:953-959[/FONT][FONT=Times New Roman, serif]10. See [/FONT][FONT=Times New Roman, serif]ME/CFS causes death[/FONT][FONT=Times New Roman, serif] pages 15-17 of [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif]”[/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf
[FONT=Times New Roman, serif]11. Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management. M Sharpe et al Gen Hosp Psychiat 1997:19:3:185-199[/FONT][FONT=Times New Roman, serif]12. See [/FONT][FONT=Palatino Linotype, Palatino Linotype, serif]UNUMProvident Policy that underlies the MRC PACE Trial[/FONT][FONT=Palatino Linotype, Palatino Linotype, serif] and [/FONT][FONT=Palatino Linotype, Palatino Linotype, serif]The Woodstock Connection[/FONT][FONT=Times New Roman, serif]pages 60-62 [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical [/FONT][FONT=TimesNewRomanPSMT, serif]Medicine: How to make a disease disapp[/FONT][FONT=Times New Roman, serif]ear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=TimesNewRomanPSMT, serif]13. [/FONT][FONT=Times New Roman, serif]Illustrations of the effects of the psychiatric lobby’s dissemination of misinformation[/FONT][FONT=Times New Roman, serif]pg 83-85 [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=Times New Roman, serif]14. [/FONT][FONT=Times New Roman, serif]Comments of doctors to ME patients[/FONT][FONT=Times New Roman, serif]pages 85-86 of [/FONT][FONT=Times New Roman, serif]“[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=TimesNewRomanPSMT, serif]15. In 2001 [/FONT][FONT=TimesNewRomanPSMT, serif]the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College, London[/FONT][FONT=TimesNewRomanPSMT, serif] tried and failed[/FONT][FONT=TimesNewRomanPSMT, serif] to unofficially change the classification of CFS and ME to F48.0. S[/FONT][FONT=Times New Roman, serif]ee also “[/FONT][FONT=Times New Roman, serif]Attempts to reclassify ME/CFS as a mental disor[/FONT][FONT=Times New Roman, serif]der[/FONT][FONT=Times New Roman, serif]” on page 53 of “[/FONT][FONT=Times New Roman, serif]Magical [/FONT][FONT=TimesNewRomanPSMT, serif]Medicine: How to make a disease disapp[/FONT][FONT=Times New Roman, serif]ear[/FONT][FONT=Times New Roman, serif].” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=Times New Roman, serif]16[/FONT][FONT=TimesNewRomanPSMT, serif]. For a list of abnormalities seen in ME patients s[/FONT][FONT=Times New Roman, serif]ee pages 11-14 of “[/FONT][FONT=TimesNewRomanPSMT, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=TimesNewRomanPSMT, serif]” [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf[FONT=TimesNewRomanPSMT, serif]17. http://www.investinme.org/mestory0041.htm [/FONT]
[FONT=TimesNewRomanPSMT, serif]1[/FONT][FONT=Times New Roman, serif]8. The MRC receives annual ‘grant-in-aid’ funding from Parliament through the Department for Business, Innovation and Skills (BIS)[/FONT][FONT=TimesNewRomanPSMT, serif]http://www.mrc.ac.uk/About/Factsfigures/index.htm[/FONT] [FONT=TimesNewRomanPSMT, serif]19. Pacing, Graded Activity, Cognitive Behavioural Therapy: a Randomised [/FONT][FONT=Times New Roman, serif]Evaluation. [/FONT]
[FONT=Times New Roman, serif]20. The report entitled “[/FONT][FONT=Times New Roman, serif]Magical Medicine: How to make a disease disappear[/FONT][FONT=Times New Roman, serif]” is a 442 page document prepared by Professor Malcolm Hooper in support of his formal complaint with regards to the MRC PACE Trial. [/FONT]http://www.meactionuk.org.uk/magical-medicine.pdf21. Files on Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies, item code FD 23/4553/1, in the National Archives at Kew. http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=7&CATID=-5475665&j=1For further reading see The MRC's Secret Files on ME/CFS pages 44-48 of “Magical Medicine: How to make a disease disappear” http://www.meactionuk.org.uk/magical-medicine.pdf
[FONT=TimesNewRomanPSMT, serif]22. The Whittemore-Peterson Institute for neuro-immune disease in Reno Nevada.[/FONT][FONT=TimesNewRomanPSMT, serif]23. Xen[/FONT][FONT=TimesNewRomanPSMT, serif]otropic Murine leukaemia virus Related Virus, a human retrovirus.[/FONT][FONT=TimesNewRomanPSMT, serif]24. [/FONT][FONT=Times New Roman, serif]VIPdx is licensed to use the WPI's protocols,[/FONT][FONT=TimesNewRomanPSMT, serif]http://www.vipdx.com[/FONT]
25. [FONT=Times New Roman, serif]“As noted in the Gibson report, there has also been far too much emphasis in[/FONT]
[FONT=Times New Roman, serif]the past on psychological research and insufficient attention to biomedical research.” All Party Parliamentary Group on ME Inquiry into NHS Service Provision for ME/CFS published March 2010. http://www.meassociation.org.uk/images/stories/appg_final_report.pdf[/FONT]
[FONT=Times New Roman, serif]26. Sophia Mirza died from ME in 2005. [/FONT][FONT=Times New Roman, serif]The Case of Sophia Mirza p[/FONT][FONT=Times New Roman, serif]ages 81-83 of [/FONT][FONT=Times New Roman, serif]“Magical Medicine: How to make a disease disappear”.[/FONT][FONT=Times New Roman, serif]http://www.meactionuk.org.uk/magical-medicine.pdf[/FONT]
[FONT=Courier, monospace][FONT=Times New Roman, serif]and[/FONT][FONT=Times New Roman, serif]http://www.sophiaandme.org.uk[/FONT][/FONT]

Jan

A campaign letter requesting that the BBC Programme Panorama conducts an Investigation into how UK governments bodies mistreat and neglect sufferers is now hosted on iPetitions, please take the time to sign